What a lot we’ve gone through in just 7 short weeks! From the early days right after Hannah’s surgery, which involved her 5-night stay in the hospital (I stayed with her all 5 nights as well), to her couch or bed-bound first week home – and now she’s up and around and almost back to ‘normal’, it seems.
Having a child who’s mostly immobile is a challenge – it was basically close to the same as having a toddler again in many ways. Hannah couldn’t walk much – in the first week it was only to and from the bathroom and bed. She couldn’t use the bathroom on her own since she couldn’t bend her right leg – I had to go in with her and hold her leg up while she sat. She couldn’t dress herself and in fact, just finding pants that would fit over the huge immobilizer was difficult. Luckily only the first few days home were cold ones, and she simply wore the loose scrub pants
they’d given her in the hospital to wear home. They were huge on her, but she wasn’t really leaving the house much so it didn’t matter. Once the weather got warmer, she lived in drawstring sweat or soccer shorts.
Even on crutches, Hannah couldn’t carry anything herself, so I became her ‘stuff-carrier’ as well as ‘official leg-wrangler’. And water-bringer, book-fetcher, etc. She spent those first couple of weeks hanging out on the couch during the days – my ‘couch buddy’ as I sat next to her on my laptop to get work done. She read, wrote in her journal, made more pipe cleaner bracelets, watched tv, played on her tablet – and did homework. Her teacher made a couple of home visits to bring cards from her classmates and assignments, so overall she kept pretty busy – and her attitude stayed rather good for just about the whole time.
After the first week, I started changing her knee dressing at home – which was not terribly fun for either Hannah or I, but we got through it. Her knee was covered with petroleum jelly coated gauze (to keep it from sticking to the newly grafted skin), then several layers of gauze, plus an ace bandage and then the immobilizer. It was such a relief when the immobilizer finally came off for good a few weeks post-surgery. That changed things completely and got her mobile again.
It was at that point – not quite 3 weeks after surgery – that Hannah went back to school (on crutches) and was able to start doing a lot of things for herself again. She still needed me to carry things for her, but she could use the bathroom alone again and get herself around pretty good. She got to be a whiz on the crutches. I drove the girls to and from school, since we figured that the steps on the bus were pretty steep to manage on her own – plus she couldn’t carry her school bag or lunch box herself. It wasn’t until last Friday that she was finally able to start walking without the crutches completely – she’d been going crutch-free around the house and classroom for a week or so before that.
What she is left with is three scars on her right leg. On the outer side of her upper thigh is the rectangular patch where they took the skin from for the graft. It’s healed, but appears bright pink and the skin there is definitely thinner and more sensitive than normal. Then, along the inner side of her right calf is the long incision made when they took the calf muscle to create the muscle flap that covers her knee. That incision is almost 12 inches long – it’s fully healed now, just has left the long scar down her leg.
The top of her knee is where the skin was grafted over the muscle flap and that has taken the longest to heal. Even now it’s still very shiny skin and the area where you could initially see the ‘grid’ of the skin cells is still filling in with ‘normal’ colored skin. It’s not quite knee-shaped either because of where the underlying muscle flap is located – but now that the swelling has gone down it looks a thousand percent better than the first time they unbandaged things. The doctors are very happy with how she’s healing – and the pathology report after her surgery showed no indication of abnormal cells. That was a huge relief – but she’ll still be followed up with further testing to make sure that no microscopic cells got through. Her next MRI and CT scan are scheduled in a couple of weeks.
Hannah’s attitude has remained so positive through all of this. She’s never complained about not being able to get around or do things and has only gotten upset a few times over really minor things – we knew she was letting off steam from all the stress she’s been through. She went from not wanting to look at or touch her leg, to just this week finally having it uncovered out in public and at school. She’s still limited in her range of motion and mobility on that side, but she’s working with a physical therapist twice a week and doing well. Hannah’s goals are to be able to 1) run, 2) jump, 3) play soccer and 4) ride her bike again – and it looks like we’re on track for all of those things hopefully by the fall. At least she has been cleared to swim – so the summer won’t be a complete torture for her.
It’s amazing how quickly kids adapt and bounce back after major leg-altering surgery like this -I remain in awe of Hannah’s courage and bravery throughout the past few months.